Growing pains and other hiccups in the sharing of data with patients doesn't mean healthcare providers should stop trying to make information more accessible to consumers or that people should stop demanding to be more at the center of their own healthcare, a well-known advocate of participatory medicine told an audience of medical informatics professionals.
Keynoting the opening session of the American Medical Informatics Association (AMIA) Annual Symposium in Washington on Sunday, cancer survivor "e-Patient" Dave deBronkart, a one-time marketing professional in the typesetting industry, pointed out that a press-printed Bible from 1631 omitted an important word from the Seventh Commandment: "not." This infamous "Wicked Bible" instructed readers: "Thou shalt commit adultery."
Though there was outrage at the time, the world didn't abandon the printing press in favor of the pre-Gutenberg ways of transcribing every copy of every manuscript by hand, deBronkart said. Similarly, mistakes—even of the dreadful variety—should not derail momentum as healthcare shifts from a provider-centric, paper industry to an electronic one with the patient at the center, he argued, since the old way is so inefficient and often dangerous.
After being diagnosed with Stage 4 renal cell carcinoma in 2007, deBronkart was not given much of a chance at survival. Frustrated, the longtime internet user turned to the Association of Cancer Online Resources (ACOR) website for ideas.
Within an hour of logging onto ACOR, deBronkart had discovered a lot of advice he didn't see in "establishment" medical journals or websites, which said things such as, "prognosis is bleak," and "outlook is grim." Among his finds was that one of four doctors in the country who did an experimental treatment known as high-dosage interleukin-2 (HDIL-2) was at Beth Israel Deaconess Medical Center in Boston, where the New Hampshire resident already had been a patient.
"This is useful information when your back is against the wall," deBronkart said.
"I turned to the patient cancer community and I got 17 stories," he continued, and eventually got approved for HDIL-2 treatment. Every side effect that hit him during the four-week regimen was mentioned by other patients in one of the online groups he frequented.
"Surgery and interleukin worked," said deBronkart, author of three books, including his latest, "Let Patients Help." DeBronkart is alive and well today, and fulfilled his wish of dancing with his daughter at her wedding. This year, he became a grandfather.
"How can it be that the most useful and relevant information can exist outside the traditional medical literature?" deBronkart asked the audience. Because of the Internet, people can connect in ways they could never do so before. DeBronkart noted that 2014 is the 20th anniversary of Mozilla and the public World Wide Web, which has become like a system of capillaries sharing nutrients, growing ever more powerful as information and users have proliferated.
The E in e-Patient Dave could stand for equipped, engaged, empowered or enabled, depending on the context, deBronkart said. He first noticed the potential of what has come to be known as e-patients way back in 1989, when he was the lead sysop (administrator) of the CompuServe forum for attention deficit disorder, when ADD was a somewhat new diagnosis. "We had 10,000 active members, and I do mean active," deBronkart said.
Doctors used to tell him to stay off the Internet to avoid scaring himself, deBronkart said. Then he noted that he met his wife on Match.com in 1999, when online dating was still kind of a novelty. In justifying his internet searches for answers to health questions, deBronkart joked, "Well, before I found Ginny, I went through some suboptimal search results."
The lesson? "Don't assume that any one source is perfect," deBronkart said. This includes medical professionals. However, he said not to interpret this attitude as being anti-doctor. "It's about being a good partner with the doctor."
DeBronkart noted that the late Dr. Tom Ferguson, who was doing some of the preliminary work for a group that became the Society of Participatory Medicine when he died in 2006, cautioned that it "may be more dangerous not to Google your condition." Looking up information online is no more anti-doctor or anti-medicine than Copernicus and Galileo were anti-astronomer, Ferguson also said.
DeBronkart explained that Dr. Gunther Eysenbach, founder of the Journal of Medical Internet Research, spent three years looking for a single instance of "death by Googling." Eysenbach, a self-described "infodemiologist" at the University of Toronto by way of Freiburg, Germany, came up empty.
"People perform better when they are informed better," deBronkart said. "It's perverse to keep people in the dark and then call them ignorant," he added.